Unable to walk overnite?

Has anyone had issues with their boys' all of a sudden not able to walk or stand at all overnite? Then the next morning get up and walk around the next morning like that day never happened?
This last Friday and Saturday, Austin, now age 11, literally could not stand on his own. The day before, he was walking (not great, but as usual for lately), then all of a sudden he cant make it from the sink to the toilet, and cant stand up long enough for me to get his pants down to use the restroom!! I was totally shocked ( I didn't show him this), I never thought it would happen overnite!! No one ever told me this! Then the next morning, he walks from his room to the kitchen, and is pouring his cereal, asking me to get his milk!! Has anyone else seen this in their boys??

Replies to This Discussion

Hi Ana,
My name is Jennifer and I am a PT who has worked with many boys with DMD. I have had clients that walk one day and then don't walk again the next day or from then on out. It is not how I generally see progression but the rest he would have gotten on his "down" day may explain why he was able to walk the next day, although I would not have expected that level of activity!

Our son is also 11. We haven't noticed (or even heard for that matter) what you have described. But I do notice Alexander falls way more often the day after having extended himself physically. We sometimes let him have a very physical day/outing under certain circumstances then the next day even tho he doesn't feel tired, he falls a lot. It's very frustrating!!

Thank you so much for your prayers!! They mean so much. Does Alexander use a chair? How developed has his MD become?

cheryl cliff said:

Hi Ana,

Our son is also 11. We haven't noticed (or even heard for that matter) what you have described. But I do notice Alexander falls way more often the day after having extended himself physically. We sometimes let him have a very physical day/outing under certain circumstances then the next day even tho he doesn't feel tired, he falls a lot. It's very frustrating!!

Thank you Jennifer! That info does help rest my mind somewhat. I have tried contacting his PT, we have not been for quite some time, and Im not hearing back from her. I'm still waiting on calls back from his Neuro. It's great that you're on here offering insite!! Thanks so much!

cheryl cliff said:

Hi Ana,

Our son is also 11. We haven't noticed (or even heard for that matter) what you have described. But I do notice Alexander falls way more often the day after having extended himself physically. We sometimes let him have a very physical day/outing under certain circumstances then the next day even tho he doesn't feel tired, he falls a lot. It's very frustrating!!

Alexander uses a scooter for outdoor things. He hasn't required it in the house yet but I see whats coming and boy is it hard to watch!! When he was first diagnosed, 2 years ago, he seemed to be doing quite well - so we were told by the three neuro's we took him to see. Some even thought he might be an outlier, not typical. But this past year his disease progressed a lot. He still walks but he is much weaker than ever and can be knocked over by the slightest bump. I tried to get him in a power chair this summer but he REFUSED so we settled with new scooter instead.

So difficult seeing our sons stop walking ;( !! How is Austin doing aside from this thing you just mentioned?

Ana said:

Thank you so much for your prayers!! They mean so much. Does Alexander use a chair? How developed has his MD become?

cheryl cliff said:

Hi Ana,

Our son is also 11. We haven't noticed (or even heard for that matter) what you have described. But I do notice Alexander falls way more often the day after having extended himself physically. We sometimes let him have a very physical day/outing under certain circumstances then the next day even tho he doesn't feel tired, he falls a lot. It's very frustrating!!

Austin was diagnosed at 8yrs old. Which is usually uncommon, I'm surprised to hear about the same from you. I guess what's really weird about Austin is that every time I notice a really big progression it seems to be after one of his bdays. I noticed the falling and not getting up right, etc.. right after his 8th bday, there have been other times, then this. He started using his chair full time at school the last few months last yr. Here recently he's been using it in the house more often, but still not 100%. He has ADHD on top of the MD, and I think he's also OCD. As long as you "understand" him, it's usually ok.
He needs help in the bathroom quite a bit, when he falls, it's almost like a baby deer falling, not knowing how to use his legs. He has gotten used to the falling, so, that's not as much of an issue as it used to be... and after talking to him, it seems even now, his main concern is access to the bathroom (his chair wont fit). He really deals with it really well compared to what would be expected!!!

Thanks for your support

cheryl cliff said:

Alexander uses a scooter for outdoor things. He hasn't required it in the house yet but I see whats coming and boy is it hard to watch!! When he was first diagnosed, 2 years ago, he seemed to be doing quite well - so we were told by the three neuro's we took him to see. Some even thought he might be an outlier, not typical. But this past year his disease progressed a lot. He still walks but he is much weaker than ever and can be knocked over by the slightest bump. I tried to get him in a power chair this summer but he REFUSED so we settled with new scooter instead.

So difficult seeing our sons stop walking ;( !! How is Austin doing aside from this thing you just mentioned?

Ana said:

Thank you so much for your prayers!! They mean so much. Does Alexander use a chair? How developed has his MD become?

cheryl cliff said:

Hi Ana,

Our son is also 11. We haven't noticed (or even heard for that matter) what you have described. But I do notice Alexander falls way more often the day after having extended himself physically. We sometimes let him have a very physical day/outing under certain circumstances then the next day even tho he doesn't feel tired, he falls a lot. It's very frustrating!!

Ana,
Just reading through and found your post. I feel that my son has those kinds of days too. He is doing so well one day and then the next morning he can barely get out of bed. We just started using a transport chair at school and when we go out to the stores. Also I feel that my son is a little OCD. He has to have everything just so all the time. Things can't be lying around the house before he goes to bed. My son was dx when he was 6. Now age 10 we are getting scared because within the last few months he has gotten weaker. He can't get up off the floor at all. Not many falls though. Well thanks for listening.
Take care
Dina

Ana said:

Austin was diagnosed at 8yrs old. Which is usually uncommon, I'm surprised to hear about the same from you. I guess what's really weird about Austin is that every time I notice a really big progression it seems to be after one of his bdays. I noticed the falling and not getting up right, etc.. right after his 8th bday, there have been other times, then this. He started using his chair full time at school the last few months last yr. Here recently he's been using it in the house more often, but still not 100%. He has ADHD on top of the MD, and I think he's also OCD. As long as you "understand" him, it's usually ok.He needs help in the bathroom quite a bit, when he falls, it's almost like a baby deer falling, not knowing how to use his legs. He has gotten used to the falling, so, that's not as much of an issue as it used to be... and after talking to him, it seems even now, his main concern is access to the bathroom (his chair wont fit). He really deals with it really well compared to what would be expected!!!

Thanks for your support

cheryl cliff said:

Alexander uses a scooter for outdoor things. He hasn't required it in the house yet but I see whats coming and boy is it hard to watch!! When he was first diagnosed, 2 years ago, he seemed to be doing quite well - so we were told by the three neuro's we took him to see. Some even thought he might be an outlier, not typical. But this past year his disease progressed a lot. He still walks but he is much weaker than ever and can be knocked over by the slightest bump. I tried to get him in a power chair this summer but he REFUSED so we settled with new scooter instead.

So difficult seeing our sons stop walking ;( !! How is Austin doing aside from this thing you just mentioned?

Ana said:

Thank you so much for your prayers!! They mean so much. Does Alexander use a chair? How developed has his MD become?

cheryl cliff said:

Hi Ana,

Our son is also 11. We haven't noticed (or even heard for that matter) what you have described. But I do notice Alexander falls way more often the day after having extended himself physically. We sometimes let him have a very physical day/outing under certain circumstances then the next day even tho he doesn't feel tired, he falls a lot. It's very frustrating!!

Hi Ana, I have just read your message above and I have noticed that my son Kevin is slowing down a bit too, have not experienced what you have and he is 12. Walks on his toes, his back has curved quite a bit from this and it is how he keeps his balance. I can imagine your shock, nobody is ever prepared for what happens with our boys and it takes it totally out of us when it does. Thinking of you and praying for your family too. Hope things get a little easier for you to handle, all the help and contact you need is right here for you. Kindest Jo-Anne

MY sons who are 41 and 36 had exactlly the same experience at 13. Billy was walking and would actually crawl onto the school van until we went to disney world in aug 1981. Disney provided a non powered wheel chair for him to use while we were there. When we left he could not when we returned home. walk and luckily we had a wheelchair ordered before we left and he then used it from then on. He received a power assist unit at about 16 and was in a power chair by 19.